A group of families using our wonderful homeschooling program that makes it possible for this chronically ill mom to still bless my children with a quality, Biblically-grounded education even when we are "bed-schooling" many days.

Monday, August 31, 2009

After so many years of "IF" (infertility), my heart will never be far from the journey nor from those still walking this heartache. Recently a member of the Hannah's Prayer Community Forums posted her thoughts and fears in the early steps of realizing she was no longer just trying to conceive, but living the realities of infertility. I will not comment further, but rather let her post speak for itself...

Since introducing myself and lurking around here a while, I've finally come to the point that I can identify what I'm feeling, and right now it's fear. I KNOW that we are to be anxious about nothing, but all of this seems so new and terrible to me that I don't really know how not to be afraid of it without ignoring what I'm fearful of, and I know that's not the answer either. I'm hoping some of you wise women will have some wisdom to share, although to be honest I'm hoping I'll magically end up with a BFP ["Big Fat Positive" pregnancy test] this month and not have to worry about it anymore. But here goes.

I'm afraid I'll be "sick." - I've always been healthy and I'm afraid of finding out that I'm really afflicted with something and spend the rest of my life seeing doctors, trying different meds, and having surgeries. I'm a nurse- I've seen this life, I've never wanted it. I'm afraid that this not-conceiving thing is just a symptom of whatever is medically wrong with me.

I'm afraid of losing my ability to love children. - All my life all I've done is work with kids. In church, at my job, in social gatherings. I gravitate towards them naturally. I'm afraid of not being able to enjoy them any more, and of losing that part of my identity, the one that's "good with kids."

I'm afraid of financial strain. - I know that we'd like to adopt, but I'd also like to start that process as soon as possible instead of using all of our resources on fertility treatments first and then having nothing left over to adopt with. This isn't really high on my list of fears, but I find myself researching adoption options already when we haven't even been to see the doctor yet. DH won't even discuss a "what if" until we've tried for "a while longer" (how long is 'a while' again?)

I'm afraid of depression. - Self-explanatory. Both my parents struggled with depression, and the pain is so overwhelming sometimes that I wonder if I'm not slipping towards it too. I really don't think so right now, but can I take years of this?

I'm afraid of being outcast. - Having to explain my status to every new person I meet. Right now it's not too hard, we've "only" been married for 2 years, after all, and I look several years younger than I am. But this can't last much longer. I'm a pretty private person (read: pronounced introvert), and I hate being known by my 'status.' It can be hard enough for me to make friends sometimes anyway. I don't want a stigma over my head too.

I'm afraid of no babies. - Obviously! But really, I always wanted 6 kids at least. Can I really handle none?

I'm afraid of a spiritual reason for IF. - Sometimes, I know God doesn't allow "good things" because of something else we'll deal with in our lives. What if I can't have kids because I'm going to die of cancer next year and God didn't want to leave my husband alone and with an orphan? I know that's far fetched, but maybe you'll understand. If I can't have kids because of something coming that would be terrible for children, I don't know if I want to go through that either.

*sigh.* That might be it. We have an appointment with my gyn soon. Hopefully we can get most of my blood work paid for by using the "irregular cycles" and "painful menstruation" card since IF labs aren't covered. Anybody know how much a SA runs?

But, to be positive too:

I'm grateful for my DH [Dear Husband] - He is kind, understanding, and (almost) totally on the same page as I am. He holds me when I'm sad and tells me we're just going to take it 1 step at a time. And he's not scared of "putting sperm in a cup" as he calls it!

I'm grateful that I've been through pain in the past - Because I have some idea how to handle rough emotions. Not the same, but helpful nonetheless

I'm grateful that we had 1 year of of marriage footloose and fancy-free before baby-making started to hang over our heads. I'd hate to have started my marriage with months of disappointment.

I'm grateful, of course, for God's grace - And try to remember to pray for the sons he wants to bring into His kingdom when I feel the pain of not having any in my life yet. I'm grateful His heart for the world hurts just as much (more, actually) than mine at the thought of the children He wants for himself. Our God knows the spirit of ALL our infirmities, and I am so grateful to know that.

Thanks ladies, for listening, and for any strength you might be able to add to my journey. It helps a lot to know that I am not alone in this battle, and to be reminded that my worth isn't based on the outcome of a child.

Kristina, thank you for your courage to put into words what so many of us have to process in our hearts and for graciously letting me share these fears with my readers.

Thursday, August 27, 2009

Well, here it is Thurday and I'm finally up to posting about Sunday. Honestly, it's been a very hard week. Friends are starting to ask, "Are the IVs working yet?" and I'm just not sure how to answer that. I've only had 3 out of 12-24 so far. The IVs themselves have been pretty rough and my arms look like bruised hamberger since it's taking 2-3 nurses nearly half an hour each week to find a good vein that will accept a needle and not end up bursting once the needle is in. (I ususally am complimented by lab techs on my great veins and easy pokes, so this is really strange.) They have ordered a PICC line (sort of a deep-vein IV administered via local anestesia and ultrasound and kept in until the whole course of treatment is finished) before Sunday's treatment but we are waiting to see if the insurance approval and scheduling all come through on time.

I had a bit of a reaction to last week's IV - tight chest, burning throat, hurting and slightly swelling tongue on top of the normal nausia and general sense of "icky" I feel during a treatment - but will be taking benadryl with each treatment from now on, so hopefully we can keep moving forward with them. The one thing I have amazingly and thankfully not had to deal with during either of the past 2 treatments has been a headache; what a welcome relief after the doozie I had during my first treatment! This morning is the first morning all week when I haven't felt like I had been hit by a truck when I tried to wake up. When I say "feel like I was hit by a truck," that's not an exageration or figure of speach. On Monday morning I felt so much pain, so much exhaustion and heaviness in every part of my body, so much swelling an puffiness in my face making it hard to even open my eyes, pounding headache, and still such a raw and burning throat, now accompanied by a dry cough and lingering heavy/tight chest, that I honestly could not imagine that being hit and thrown by a moving vehicle could have felt any more difficult!

This morning I'm certainly not feeling "great" but I am feeling functional for the first morning all week. I'm in some pain, but not too bad, and I don't feel like I have a heavy cloud hanging around my head like I have every morning so far this week. I can open my eyes all the way without causing more pain and I seem to have a measure of energy that is a welcome relief! Afternoons, overall, have been better than my mornings this week, so if I'm starting out today on a better note to begin with, I am quite hopeful that I will have some good portions of the day today, tomorrow and Saturday before having to start all over again with Sunday's IV.

I guess if we are trying to measure immediate results from the IVs, that may be saying something, as I normally couldn't go from a "hit by a truck" morning (though this Monday's "hit" was much worse than anything I've normally experience when I've used that statement more figuratively in the past) to functional enough to start a new homeschool year with my kids that same afternoon. I couldn't normally have a Monday (and Tuesday and Wednesday) like I've had and actually wake up to a Thursday like today. So yes, I guess we must be making some form of progress so far, but it is definately coming at a price.

Thursday, August 20, 2009

I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.

The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.

Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!

Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?

Wednesday, August 19, 2009

Tuesday, August 18, 2009

My mom is having a total knee replacement this morning. If you would please keep her in your prayers as she comes to mind, I would appreciate it. She will have a long recovery ahead, but we are praying that this will prove to be a great decision in the end. Her name is Betty. Thank you for praying with us. :)

Monday, August 17, 2009

Yesterday's IVIG went so much better than last week's! I went in with only a very mild headache this time (last week had been day 7 of about a 12 day migraine) and by the end of the infusion I actually walked out with no headache at all!!! I had a wonderful nurse who was careful to listen to what I had to say about my body and let me set the pace. She agreed to let me monitor my blood pressure through the entire infusion and we upped my push very slowly through the afternoon. Where I could barely tolerate a push at 10 last week (causing a bp spike that had me off the drip for a full half hour) we were able to work all the way up from 5 to 21 this week and had the whole infusion in only 3 hours!

I had one spike of 149 over 80 with a pulse of 113, but was able to bring it down in just 5 minutes. We had a hard time starting my IV, something that's usually not an issue, so I had a couple of nasty bruises from blown veins, but in the big picture, that's not a big deal! I woke up feeling very little pain of any kind this morning and while a shower has wiped me out, I cannot begin to say how much better I feel right now than I did this time a week ago. Yesterday morning I was really dreading the ordeal(actually cried through about half of the church service), but today I have hope again that we are on the right track!

Saturday, August 15, 2009

Happy anniversary, my dear Rick. Other than asking Jesus to be my Lord and Savior, becoming your wife was the best step I've ever taken in life. Thank you for putting up with me even when I'm grumpy, tired, sick, unshowered, hormonal, emotional and hard to live with. (I sound like all 7 dwarves, and then some!) I love you and thank God for you every day.

Friday, August 14, 2009

Over the years I've seen many creative ideas for raising funds to adopt a child. I happened across one this morning that really impressed me and I had a share it with you. Preparing for a Miracle is one family's journey to bring their daughter home from South Korea. They are working to raise $10,000 through some amazing online raffels. Reading through their story, I am reminded so much of our own journey and am in prayerful tears that God will work all things together to bring their Lily home soon!

Wednesday, August 12, 2009

I survived my first IV Gamma infusion this past Sunday. It was pretty brutal. I was on my 7th day of a migraine headache when I got there and even on pain meds was pretty miserable. They started me on the absolute lowest push the machine could do and I felt dizzy and hot and nausious but could handle it OK. After about an hour they tried to up the push from a 5 to a 10 (they guy across from me was getting the same drug at a rate of 300, so this was still very low and slow) and I immediately had a spike in pulse and blood presure, accompanied by significant dizziness and nausia, and had to shut down the machine for half an hour before we could move forward. The IV started at about 1:30 and we finally finished around 7PM (after brining it back up to the 10 for the last half hour or so - still harder to handle than the 5, but I didn't react as badly as the first time around). I am already dreading next Sunday, but I really feel this is a step in the right direction. My nurse said I actually did really well for a first infusion. Thankfully there were no significant or dire reactions such as an allergic reaction and we can plan to continue forward over the next 11 weeks. Thank you for your prayers.

Monday, August 10, 2009

I am trying to sell $200 worth of Affordable Mineral Makeup™ by this Wednesday in order to qualify for a rep incentive. If anyone makes a purchase from http://www.InnerBeautyGirls.com by Aug. 12 (before midnight EST) at full price, email me - InnerBeauty@AffordableMineralMakeup.com - your purchase order number from your completed transaction. I will paypal you a 25% refund of your product purchase total (not including tax/shipping fees) as soon as your order is processed. Your purchase MUST originate through my link in order for me to receive credit for your purchase and be able to send you the refund.

I really want to hit this goal, so I'm offering you a huge chuck of my commision as a direct cash-back refund. Tara (the company owner) sometimes offers discounts ranging from 10-13% (and only very rarely up to the 13% mark), but 25% if a really big deal and I'm willing to take the cut directly out of my earnings in hopes of gaining some new long-term customers and letting you see how wonderful these products are for yourself! This really is your very best chance to try out Affordable Mineral Makeup™ at a really great price. I hope you will take advantage of this amazing, but very time-limited deal and pass my offer along to your friends as well. Thanks for helping me out!

Friday, August 7, 2009

I love entering give-aways. I'll put my name in almost any drawing out there, as long as I'm not committing to enter a costly contract or agreeing to anything that stands against my moral paramaters for living. My sweet hubby finally asked me to stop entering draings that were going to lead to unending sales calls or sitting through timeshare presentations or in-home "free estimate" sales pitches like the ones that happen when I enter all the drawings when homeshows come to town. So I've instead turned to the thrill of online contests and as a result I have won a large stack of books (many autographed by the authors, a random collection of toys and children's products, a few food items, and most recently a week's free RV rental ($1,600 value) and a toddler's ballance bike ($140 value).

I've even entered to win houses a couple of times, and while I've never come close to that kind of prize, I actually had a neighbor/friend who did in fact win her house several years ago! My moto is, "Somebody's got to win, and if I don't enter, there's no chance it will be me." There are two things I've always wanted to win (that are a little less ambitious than a free house) that I keep entering for but have yet to bring home. The first is a new mini-van. I've been entering to win free cars of various kinds for probably 15 years or more, and so far have never come close. But that doesn't mean I won't keep trying. :)

The second is a laptop computer. I've lived through 19 years of chronic illness (with a lot of bed-bound days over those years), 3 high-risk bedrest pregnancies, am a homeschooling mom and a published author. Over the next three months I'll be undergoing about 48 hours of IV treatments that will have me stuck in a hospital infusion center where I would love to be working on my next book project and in late September our family will be taking to the road for our RV blogging trip. I dream of having a laptop computer! My sweet husband bougth me my very own desktop for Christmas a few years back, the first new, non-hand-me-down computer I've ever owned in my entire life, and I am so VERY thankful for this luxury. But I romanticize the freedom of a laptop.

So my newest quest is to win a laptop computer! (Or if by any chance there is some computer company guru out there reading my humble little blog and you want to sponsor a computer review, I would be happy to take you up on test-driving your product to share with my readers! *GRIN*) I participated in a Twitter contest a few weeks ago and didn't win any of the netbooks they were giving away then, but starting Aug. 12 I'll be following all of these blogs in the HP Back to School Give-Away and entering at a differnt site each day until early Sept. in hopes of winning one of their computers! Today I've entered for one of the 9 BlogHer Intell laptops being given away:

OwlHaven (I really enjoyed this author's main site on raising large families and homeschooling.)

Thursday, August 6, 2009

I struggle with how much of my story to share. With infertility I was ultra-transparent. With other chronic illness, I don't feel quite so inclined to spill "the good, the bad and the ugly," at least not all the time. I'm a huge believer in peer support, that it is critically important to the mental and emotional well-being of someone living with chronic pain/illness to know we are not alone. And how will we connect if we aren't open about the issues?And yet there's just something daunting about having my medical history plastered all over the internet. Some days I feel very open and "tell all" while other days I worry about the reality that once something is posted on the internet, there's really no "taking it back," or realing in the potential long-term impact of revealing the reality of my struggles. I know I post more than most, and usually I'm OK with that, but other days I stop and wonder if being so transparent is really the wisest of ideas? I certainly hold back more than I share because of that nagging sence of the unknown impact of the internet. Today's a day I feel overwhelmed and want to just spill it all out, but do I really want my great=grandchildren (or yours?) being able to access today's struggles generations from now? I just don't know! *sigh* Maybe I'll create a password protected blog where I can share all, yet not allow universal access to my thoughts???How about you? Are you a tell-all kind of gal when it comes to your health, or do you guard your information as private? I really can see both sides of the fence!

P.S. I'm on day 4 of a migraine I thought was resolving yesterday but was back with a vengance at 4am. I'm fighting for everything I'm worth to keep from throwing up because I'm afraid that once that part starts, it won't stop easily! (I've been continually nausious for about 5 weeks now with ongoing digestive issues, but this is a new migraine-related layer of nausia on top of the pre-existant virus or whatever it is I already had going on.) I had a 45 minute drive up curvy mountain roads (well ride actually, as I can't drive myself that far) for blood draws yesterday morning, followed by an hour back down the mountain and stopping at another doctor's office for follow-up x-rays on my foot. Today I see my primary care doctor to talk about the new medication that was called into my pharmacy yesterday that I'm not even sure what it's for, and Sunday I start IVIG treatments with my first IV anticipated to take 4-5 hours to administer and weekly infusions for the next 12 weeks. So there it is, today is a "spill it" day afterall.

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